When Bad Things Happen to Great Patient Advocates

Kevin Leonard, a tireless patient advocate and dear friend in Toronto, Ontario died this past summer. He was only 55 years old.

Had I been blogging at the time I would have written about him, but was reminded of Kevin’s amazing life and untimely death by this fitting tribute in the Globe and Mail recently penned by his wonderful wife, Sandra Dalziel. She wrote:

Husband, professor, writer, patient advocate. Born July 24, 1957, in Montreal; died July 15, 2013, in Toronto of complications arising from Crohn’s disease, aged 55.

Kevin Leonard was a renaissance man of passion and purpose, always determined to seize the day. He was at his best in front of a crowd, captivating his audiences whether teaching students, delivering a presentation, performing comedy or holding court at family gatherings.

Kevin was the middle child of three born to Rita and John Leonard. A proud 1974 graduate of Loyola High School in Montreal, he went on to complete his BComm and MBA at Concordia University. In 1988, he graduated with his PhD from the joint business school doctoral program in Montreal. He added his Certified Management Accountant certification in 1993.

Diagnosed with Crohn’s disease at the age of 14, Kevin’s health was often compromised but he refused to let that stand in the way of accomplishing his goals. He worked in banking, credit scoring and academically in business and health informatics. He was a popular and respected teacher and supervisor at the University of Toronto’s Institute of Health Policy, Management and Evaluation.

When Kevin had an idea, he acted on it. One of his life’s highlights began with a letter to Roger Neilson, coach of the New York Rangers, offering his services to capture hockey statistics he had developed. This led to his appointment as video coach for the Vancouver Canucks in 1994, when the team went to the seventh game of the Stanley Cup finals and fell just short of a win. Kevin created a computer system that captured both data and video, making information available almost instantly at a coach’s request. His play Coaching Matters, based on this experience, has been staged in professional theatres. This was one of six plays he wrote.

Kevin met Sandy in Ocean Park, Maine, when both were in their teens. They spent many happy summers at “the beach” with extended family. Married in 1982, they began their life together in Montreal, later moving to Ottawa, California, Cambridge, Ont., and finally Toronto. They were proud parents of two Yorkshire Terriers, the late Noël, and Randall, 13.

Kevin had a wonderful sense of humour and quick wit, and knew how to make events memorable for others. To celebrate Sandy’s 40th birthday in 1999, he organized a surprise party where guests were asked to dress like it was 1899. He was a sports fan who could quote stats and a roulette player with a “system.” Later in life he took joy in baking and cooking.

Living with Crohn’s disease for more than 40 years involved frequent and extensive interactions with the health care system. Kevin’s spirit, optimism and mental discipline played a vital role in managing his health. A dedicated patient advocate, he founded Patient Destiny in 2005 to promote “patients as partners in their health care” and to help move the eHealth agenda forward. He believed the system could be transformed if patients had electronic access to their health information. Kevin was able to access some of his own health information and was an active partner with his care team.

The University of Toronto is paying tribute to his tireless patient advocacy through the Kevin J. Leonard Award for students in the Institute of Health Policy, Management and Evaluation.

I have known Kevin for many years, as we both shared an interest in improving patient access to their health records and creating a more patient-centric healthcare system. His was borne out of his experiences with Crohn’s disease since he was a teenager, and unfortunately suffering virtually every complication of this challenging disease, cheating death on more than one occasion.

In 2005, Kevin sent me his book, A Prescription for Patience: a Guide to Improving Our Healthcare System. In it, Kevin described how our healthcare system must change to be more patient-centric, and to make it possible for patients and caregivers to be more engaged in their healthcare. He also advocated for patient access to their own health information. The proceeds from the sale of the book were donated to Patient Destiny, a national patient advocacy group Kevin and Sandra founded.

Patient Destiny convened stakeholders across the Canadian healthcare system to discuss how they could make a more patient-centric system. I was honored to participate in and speak at most these meetings.

Despite battling with increasingly frequent healthcare challenges and an obstinate healthcare establishment, Kevin remained warm, engaging, and funny. Throughout it all, Sandra provided the love, stability, partnership, advocacy, and organizational wherewithal that Kevin needed to survive and to pursue his agenda.

As an example of Kevin’s enduring work, he did a study (unpublished) through which he found that the standard of care in Ontario (as it is in many places, unfortunately) was for physicians to require patients to make an appointment if they wanted to receive their test results. This incensed Kevin and prompted my observation that this practice further reduced the capacity of overbooked physicians’ offices. Face-to-face care with physicians should be reserved for patients who require that intensity of care, not for transactions that can be readily done through alternative channels.

Through Kevin’s work and others’ contributions, the healthcare system in Ontario has matured. Today there is much more discussion about patient-centered care, there are provider organizations that allow patients to see their test results online, and there is a greater emphasis on primary care. Ontario has arguably the most patient-centric of all the provincial healthcare systems.

It’s interesting that bad experiences with healthcare often leads to people becoming vociferous advocates for the patient’s voice in healthcare. And it is sad when these strong, effective voices ultimately succumb to their diseases. Besides Kevin, another example would be the late Tom Ferguson, whose inspiration led to the founding of the Society for Participatory Medicine.

Kevin, I will miss you and I hope that your work continues through those you have touched and through the student recipients of the newly created Kevin J. Leonard Award at the University of Toronto.

Rest in Peace my friend.

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